What is Chronic Lymphocytic Leukemia CLL
Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed f...
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CLL Support Group Needs a Kick Along IMHO
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I joined two online forums seeking support for my CLL about 2 weeks ago - this one and and the Talk Blood Cancer CLL - and I made a few posts.
I have checked back several times and even tonight my posts are still the most recent ones. I may be mistaken, but I have refreshed my browser page and I think it is the case. I conclude this forum is not what I would call interactive. There is a lot of valuable and useful information here, but I am pretty much reading documents online written by persons anonymous, not making any personal connection. I then visited and joined another online group - CLL forum. Now the reason I think that CLL forum is working is that people are communicating. best wishes gary Posted on 03/31/09, 10:03 am |
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Hi Gary,
I was going to tell you about CLL forum but I see you found them. Lots of good info there. This group seems to be just a few CLL strays. The forum has always been where I go. There is another one too called CLL Christian Friends. Good info there even if you do not share their Christian faith. CLL topics is another God send of info. How long have you been dx with CLL? Lori 
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Hi Lori
Hey thanks for posting. Yes I saw the Christian CLL group mentioned at CLL forum and went right away and joined. And then saw CLL topics mentioned in CLL Forum as well. Finding me way around! I have now realised that Daily Strength seems to be the one site that offers me a space to journal. Ah well - I don't think there will be any one site that offers it all, I will just have to go back to accepting reality won't I hehehe best wishes Gary
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Sorri Lori
I missed your question I was DX last July How about you - do you have a journal in DS? gary
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Hi Gary, I just noticed your reply. This list is hard to follow sometimes. I was dx in 2003 trying to figure out why I had swollen lymph nodes. It progressed from there. I go to Dr. Kipps in San Diego. He is a CLL specialist. In fact I am seeing him this Tuesday. I'll let you know how that goes. I don't have a journal as of yet. I should do that.
Take care, Lori
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Lori
Thanks for reply. The CLL area is now 4 times more active! I enjoyed finding i had a place to able to write some journal notes. I recommend it. If you start a journal you can let your support people & friends know what's happening. Yes please keep in touch let me know what heppens with Dr Kipps. Hope its great news! Gary
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Gary,
Have noticed your comments and questions in the other CLLforum. I have wanted to ask you a question but didn't really know how to ask you directly in that forum except by private message. My question - what were your numbers that made you get the fish test? Was it just your curiosity or...../
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Hi Roserd
No FISH test yet. I don't know what a FISH test is yet either. I had what they call in Australia a "Full Blood Examination" or "Full Blood Count" last July as I wanted to sort of get an inventory on my health and I had been feeling low energy and maybe even depressed at times. Funny I don't ever feel tired or depressed nowadays, but I have made a lot of changes to my life. What is a FISH test? Have you had that? Gary My DX
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Hi Gary,
I am sorry to be so long in getting back to you. (I apologize - I got you mixed up with someone else on the other CLL site.) I wanted to look up some info as to what a FISH test was, to be as specific as possible. I went back to the CLLforum and in one of the replies to Scott with whom I got you confused I found a site which will help with the description. http://www.cllinfogroup.org/site/c...] I hope you can copy that site into your address bar. The best to you, Rosemary
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I was just diagnosed 10 days ago and I agree this really isn't the support site for me. How can I find the Christian CLL group. I tried to google it and I can't find it. Can someone help me.
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As is usually the case with me, I cannot bring up the message I'd just sent to you via another place within this site... I am not attuned to navigation here...
Being technologically deficient, not complaining, in this milieu, let me know if you ever received my first message... just trying to get another communicative ball rolling... Thank you... n i i i c e e e e e e
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